nichelle@dravetfoundation.org

Abbott grant

Increasing clinical trial readiness in Dravet syndrome- Creation and pilot of Dravet-specific clinical outcome measures

Megan Abbott, MD – University of Colorado DenverIncreasing clinical trial readiness in Dravet syndrome- Creation and pilot of Dravet-specific clinical outcome measuresClinician-Researcher Award – $75,000, 1 year Grant Summary: Dravet syndrome (DS) is the most common genetic cause of Developmental and Epileptic Encephalopathy (DEE), yet there are no FDA approved disease modifying treatments. Current precision […]

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Helbig Goldberg grant

Generating a shareable clinico-genomic data resource for Dravet syndrome 

Ingo Helbig, MD – The Children’s Hospital of PhiladelphiaEthan M. Goldberg, MD, PhD – The Children’s Hospital of PhiladelphiaGenerating a shareable clinico-genomic data resource for Dravet syndrome 2023 Genetic RFA – $1,000,000, 3 years Grant Summary: Individuals with Dravet syndrome can have different disease courses, and there are important differences in how seizure and development differences

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Sanatani Connolly grant

Extended monitoring for cardiac arrhythmias in Dravet syndrome

Mary Connolly, MB, BCh, FRCPC(C), FRCP(I), FRCP(Edin) – The University of British ColumbiaShubhayan Sanatani, MD, FRCPC – The Universty of British ColumbiaExtended monitoring for cardiac arrhythmias in Dravet syndromeClinical Research Grant – $250,000, 2 years Grant Summary: Dravet syndrome (DS) is a rare serious condition associated with early onset of seizures that typically do not

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Brunklaus grant

SCN1A Horizons – A natural history study of SCN1A-related epilepsies in the United Kingdom

Andreas Brunklaus, MD – University of Glasgow, Royal Hospital for Children, Glasgow, UKSCN1A Horizons – A natural history study of SCN1A-related epilepsies in the United KingdomGrant Support £30,000 ($41,481 USD) Grant Summary: The SCN1A Horizons natural history study launched in November 2023 and will assess up to 400 pediatric and adult patients with SCN1A-related epilepsies, including Dravet

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Gail Farfel, PhD

Gail brings more than 25 years of pharmaceutical development and regulatory rare disease experience with both large and small pharmaceutical companies. She was most recently the chief executive officer of ProMIS, a biotechnology company focused on the generation of antibody therapeutics for neurodegenerative diseases. Prior to ProMIS, Gail was the executive vice president and global

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Seizure Action Plan Coalition

The Seizure Action Plan Coalition began in 2020 as a labor of love between the LGS Foundation, Dravet Syndrome Foundation, and TSC Alliance. The organizations knew there was an opportunity to bring the epilepsy community together to bring attention and awareness to Seizure Action Plans for people with epilepsy. The three organizations served as the Governing Organizations of the coalition

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NeurologyLive Partner – Strategic Alliance Partnership

NeurologyLive®, is a multimedia platform dedicated to providing health care professionals with direct access to expert-driven, practice-changing news and insights in neurology. DSF is a member of their Strategic Alliance Partnership (SAP) program. The SAP program builds a community of advocacy groups, medical associations, and medical institutions to foster collaboration and an open exchange of

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Gaia Colasante, PHD

Reactivating Scn1a gene in different interneuron subtypes to dissect their contribution to Dravet syndrome phenotype

Gaia Colasante, PhD – Universita Vita-Salute San RaffaeleReactivating Scn1a gene in different interneuron subtypes to dissect their contribution to Dravet syndrome phenotypeResearch Grant – 2 years, $150,000 Grant Summary: Dravet syndrome (DS) is a devastating epileptic syndrome with associated relevant behavioral alterations. Heterozygous mutations in Scn1a gene account for the disease and its gene product, the sodium channel Nav1.1,

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Mackenzie Howard, PHD

Cerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndrome

Mackenzie Howard, PhD – The University of Texas at AustinCerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndromeResearch Grant – 2 years, $165,000 Grant Summary: In addition to frequent and severe seizures, most people with Dravet syndrome also suffer life-altering difficulties (“comorbidities”) with coordinated movement/muscle control, autism-associated behaviors, and learning and memory that

Cerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndrome Read More »

William Nobis MD, PHD

Effect of odorant on mortality and extended amygdala activation in Dravet syndrome

William Nobis, MD, PhD – Vanderbilt UniversityEffect of odorant on mortality and extended amygdala activation in Dravet syndromeResearch Grant – 2 years, $165,000**Co-funded with JAM for Dravet Grant Summary: Dravet syndrome (DS) is associated with a high epilepsy-related mortality, including an increased risk of sudden unexpected death in epilepsy (SUDEP). Controlling seizures can decrease the risk of SUDEP,

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